Lymphedema Awareness Week: Lymphedemic

From the LFR which has changed it's name to LER&N:

http://lymphaticnetwork.org/news-events/fighting-a-lymphedemic-seeking-lymphedema-spokespersonscelebrities-and-poli

While it is estimated that up to ten million Americans have lymphedema,
a swelling in body tissues caused by the build up of lymph fluid, this
disease has never garnered the attention given other diseases that
affect far fewer patients. There are several reasons for this. The
lymphatic system is notoriously ignored in medical curriculums, leaving
doctors often at a loss to diagnose or treat lymphedema. This also leads
to lymphedema sufferers who don’t know the name of their disease, and
thus are unaware that millions suffer similarly. Since the majority of
those in the US who suffer from lymphedema are cancer survivors, there
has been a tendency on the part of patients to underplay this side
effect from cancer treatment, even though they often state that
lymphedema can be worse than cancer. The mantra often heard is, “They
cured my cancer. Lymphedema is forever.”

Beyond these stated reasons that have played a role in keeping
lymphedema under wraps in this country, perhaps no one factor is
currently contributing to this more than the fact that the disease has
no national public figure that has become its spokesperson. There is no
“face” of lymphedema on the national stage. I have talked to physicians
who state that they have treated numerous A-List Hollywood celebrities
whose careers have hit brick walls due to the onset of lymphedema. They
also say that none will come forward. With national dialogue tied to
media coverage, and media outlets seeking ratings, attempts for coverage
amounts to intermittent trickles of information. Movements are not made
from such stuff.

We also look for advocates in politics to support our cause and there
are potentially two prominent politicians who have been linked to
lymphedema. In Ed Klein’s 2005 book, The Truth About Hillary,
he writes that a physician who had observed Ms. Clinton after the birth
of Chelsea reported to him that “she was left with a condition called
chronic lymphedema.” The physician is further quoted as saying, “That he
suspected Hillary had contracted an obstetrical infection, which was
serious enough to damage the lymphatic vessels carrying excess fluid
from her legs back into central circulation.”

Sen. John McCain’s bout with facial melanoma has been well documented.
In a December 30, 2008 article stating that lymphedema is not just a
legacy of breast cancer, Fox News reported that, “melanoma treatment
left former presidential candidate John McCain with facial swelling.” I
have not found any formal confirmation or denial on the subject from
either Former Secretary of State Clinton or Sen. McCain.

There is at least one celebrity whose ordeal from lymphedema that is
well documented. Three-time Academy Award winning actress Ingrid Bergman
suffered from lymphedema after breast cancer surgery in 1974, Her
lymphedema would become even more severe after the metastasized cancer
resurfaced in 1977 and persisted until her death in 1982. The fact that I
needed to speak of a celebrity that died over 30 years ago to make my
point, makes my point.

Given that cancer treatment can lead to lymphedema in 10% to 50% of
treated patients, chances are most people know someone with lymphedema.
Chances are equally good that you are unaware of this. Lymphedema
sufferers often report a sense of shame about their disease, which
causes them to mask it as best they can. In addition to cancer victims,
those suffering physical trauma are also candidates for lymphedema,
making it a significant issue for our military personal.

We need to make lymphatic disease and lymphedema a national priority.
First we need to create a national dialogue. Change occurs when those
most affected demand it. Eliminate the likes of Gloria Steinem
advocating for women’s rights or Martin Luther King, Jr. calling for
racial equality and the history of those movements would look very
different. As a celebrity who suffers from the disease, Michael J. Fox’s
championing of Parkinson’s made the country take notice, and has
resulted in considerable funding for research.

Champions don’t act alone. Here at the Lymphatic Education &
Research Network (LE&RN), we work with fearless parents, patients,
researchers, medical professionals and advocates fighting for change.
Beyond these frontline soldiers in this cause, we need leaders who
become lightening rods that inspire action by those who currently hide
their lymphedema and feel they have no voice.

Up to ten million Americans, along with their families and friends,
wait to hear these voices emerge. With National Lymphedema Awareness Day
on March 6th, there couldn’t be a better time to come forward, make
your mark and change history.

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William Repicci is Executive Director of the Lymphatic Education & Research Network (LE&RN).